My Dolphin love

Aside

When I was younger I was captivated by dolphins. I loved them, being from Michigan where there are no dolphins, it may have been a bit strange. My friends had pictures of movie stars and rock stars on their walls and I had pictures of dolphins. I had stuffed dolphins, crystal dolphins, all different kinds of dolphins. I loved them. Funny, that something that at one point what may have seemed silly, and pointless, suddenly makes total sense.

My daughter is sick. And she isn’t getting better. She actually, is getting worse. I know it. Her doctors know it. She totally knows it. What was once thought to be a journey that would be long but successful, has become a journey of disappointments, that is scary and filled with constant worry.  I remember when all of this started one of her doctors told us, she would be okay, that in high school she would be doing great. Living a normal life.  I remember thinking…high school….She’s 4, high school is forever away. I can’t do this until high school. Right now, if that doctor would give me that same assurance, I’d not only take it but I would celebrate. Those promises are long gone.

Faith has allied diseases. One of which is so rare…the only information you find on-line is medical journal stuff, and thats even rare. when your child has an illness like Faith’s there are no statistics….Our doctors are working closely with doctors in China. Who have seen more of her illness than any other country in the world. It’s so scary when your child is sick, its even scarier when you are alone, fighting a disease alone.

So they just keep guessing, albeit educated guessing, but guessing none the less. Our team of doctors has decided to take the least aggressive approach and evaluate its success…unfortunately, to this point its just not working. I am not sure what part of that is the hardest? Her less than 40 pound body has gone thru more surgeries than I can count at this point. If you look at her abdomen, you see a feeding tube, a colostomy bag, a Chait tube, and lots of small scars from numerous incisions that have been made. Tomorrow, they are adding a med Port.

The med Port gives us IV access, which will hopefully keep us home more than we are now. Her home antibiotics are no longer working to keep the infection away. Her colon does not absorb water the way it should so she gets dehydrated very quickly. This port will allow us to give her IV fluids at home as well as continue with IV antibiotic treatment at home.  Not to mention the hell that she has to go thru every time she needs an IV will no longer be an issue…no more pokes. 

A few weeks from now we will be back for another surgery to remove sections of Faith’s colon. This doctor in China the one who has treated the most cases of this disease says we will have to remove her entire colon. That is a decision that we are not ready make. That decision in my eyes means we have given up on her having a more normal life someday, I am not willing to do that at this point. Removing sections of colon seems like it isn’t that big of deal, but it is. The colon is where your body absorbs its nutrients. The more we take out the less nutrients we absorb. It also means everything gets moved around a different section of colon will be on the outside of her body, more scars, more yuck. I know that when you are talking something that is this serious you shouldn’t be thinking about scars, but I do. She’s my baby. And I hate that she someday will have to explain her scars to everyone.

The other day Faith was watching Dolphin Tale and she says to me, “Mom, They never gave up on Winter til she was fixed, she’s kinda like me.”  That dolphin has become our visual source of strength. Staying strong through something like this is so challenging. Your friends change, the people who have stood center stage in your life for years, suddenly drift to the back of the set. I get it, I understand, and its common, they talk to you about it here, all of the frequent flyers as they call us, the people who are strong enough to stand by you float to the top. The others, you have no time to mourn, in fact, sometimes I can go weeks forgetting about people I once cared so much about. 

For the most part its not hurtful, because when you are in this kind of pain, a friend that doesn’t care like you thought they might just doesn’t seem like that big of a deal. When you are in this kind of pain, what hurts is telling Faith we are being admitted for the third time this month because her white blood cell count is through the roof, so that nasty infection is back. What hurts is telling Will we are going back in and I don’t know for how long this time. What hurts is on the way to Mott for this admission, I took her to her favorite Thai restaurant, when I was at the counter I turned around to see her with tears rolling down her cheeks as she watched a family that was laughing and having a great time.

We left the restaurant and she was totally silent. When we were just about to pull in to the Mott ER she said, “Mom you’re never going to give up on me right? Because they never gave up on Winter, and she made it. I want to make it too.”  I quit making promises I can’t keep with my kids because with this illness I need them to know when I promise something it’s for real. But not giving up on her is a promise I can keep.

So the dolphins, that for some reason I found so beautiful when I was a teenager, suddenly mean the world to me. I look at dolphins and I think of Faith, they are friendly, intelligent, and playful. And the one named Winter, has given my baby hope,  in a situation where hope is hard to find. Hope that someday, she will be swimming in the ocean, free of tubes, bags, worry, hospitals, and medicines, just like a child should be. They never gave up on Winter, and I will never ever give up on Faith. I love that dolphin.

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12 thoughts on “My Dolphin love

  1. Arlene Genske

    Beautifully done, Mary Ann. I hope you can have this journal published some day. It is such an
    inspiration and can be so helpful to others going through similar situations. Our hearts go out to
    you and your family. I know that God is watching over you all. We keep praying for Faith to get
    better. God answers prayers……..
    Love you, honey.

  2. Lindy

    My incredible Faith, Mary Ann, and Will,
    You all create such a love through this difficult time, that you teach me and my family what tenderness, strength, commitment and LOVE is. You have many hands praying for you and lifting you up. You may think that you need this foundation and support, but it is truly all of you that are rocks. All of our love, the O’Clairs

  3. Amy Edgerton

    Wow Mary Ann/Maizeyblue(lol)
    You have got to be the strongest person I know. GOD SAID, HE WOULDN’T PUT MORE ON YOU THAN YOU CAN HANDLE, that said, YOU ARE A ROCK & A GODSEND TO YOUR FAMILY AND TO FAMILIES & PEOPLE IN GENERAL, IN MORE WAYS THAN YOU WILL PROBABLY EVER KNOW! I keep up with you, Faith, and Will.However, not being the best at twitter, I have replied to your tweets, but not sure they got to you, but please take some sort of comfort in knowing that GOD WORKS IN MYSTERIOUS WAYS GIRLY,& I know you’ve questioned that as well.You wouldnt be human if you didn’t. I don’t want to go on n on, cuz I’m sure you’ve heard all this before. Just know that you and your beautiful baby girl has touched people in so many different ways! I can only imagine! I’m sorry if I ramble, as I’m not quite sure what TO say. Its ironic that I just saw your new blog this morning, because as I dropped my 10 year old off at school, she asked,”Have you heard anything else about Faith?” I responded with what I knew already, and she just gives me a look of such sadness. And she doesn’t even know her, you know, know her know her. Kids are so resilient and funny and honest, sometimes brutally honest! I guess you get my tweets ()

  4. Amy Edgerton

    Oh no it didn’t just cut me rite off! And this is a smart phone! Anyway, I didn’t even get to proofread my reply! I wanted to say something but,..do you know why I can’t DM you?….still learning twitter girl. But, you and 1 other person, I have your tweets come to my phone as a text, cuz I gotta keep up with you friend! OK, I’M SIGNING OUT NOW, BUT PLEASE KNOW NORTH CAROLINA LOVES MARY ANN, MISS PRINCESS FAITH, AND WILL! MUCH LOVE AND PRAYERS FROM THE EDGERTONS!
    @miamymyAmy2011

  5. Jenny

    Mary Ann, you are in my thoughts and prayers 24/7!!! I wish I could help and make her all better, but the best I can do is say prayers for her all the time! You are a perfect mother and your kids are lucky to have you! You ARE the strongest person I know (& I’ve never even met you)!!! Most people, man or woman, wouldn’t have been able to handle what you’ve had to handle in their who lifetime!!! I’m glad that Faith has “Winter” to raise her hopes & spirits, Faith’s exactly what I thought of when I watched that movie; that dolphin, like Faith, never gave up!!! She’s a precious angel sent to you from heaven. She’s made you who you are today, and the woman you will always be from this experience! My prayers are with you, Faith and Will!!! xoxoxoxo

  6. Pat Preston

    Mary Ann, Thank you for your blog. It must be painful to write, but your words inspire so many people to pray very hard for you, Faith and Will.
    You know how much I love you and Faith and Will!!!! I believe in miracles and I KNOW Faith will get hers! Love you so much. I’ll be at Grandpa’s soon and will see you and the kids. Aunt Pat

  7. Myers

    So well written. I have been told that everything happens for a reason. I truly am having hard time understanding how and why one person (your family) should go thru so much pain. Seems so unfair. When my kids were really sick and Niklas’ shunt failed 3 times resulting in 4 brain surgeries I gave up on trying to figure why, but just prayed. I will pray, that things get better for Faith and that your questions get answered. As a mother I know how hard it is to see your child suffer, especially a smart little girl whose main concern is that you and doctors won’t give up on her. No one is giving giving up… You tell that to Faith.

  8. Susan

    I don’t know if I can come up with the right words to say …..Keep the Faith. You can’t focus on anything but yourself and your children. I don’t know if I’m more mad or sad, these illnesses make me IRRATE, but it’s mothers like you that give me hope to carry on with our own journey. We have only met a few times but you and Faith are in my heart and thoughts always. Stay Strong mama

  9. Donna Herring

    I have been keeping up with all that you are going through and my prayers have been with you,We are planning a trip to Florida next week and plan to stop by to see Winter. We have had one thing after another to almost make our trip to have to be cancelled. I keep feeling like I have to see Winter, and I always think of Faith. I read before how she loved Dolphin Tale. I am not sure what it is I need to do but I feel the two connect. If it is all I can do is bring her back a souvenir I am not sure. I think I will know when I get there. Let me know if you would like a certain thing from seeing Winter and I will get it to you. My prayers for you all
    donna.herring@sbcglobal.net and I am on your facebook page also

  10. JJ Lane

    You are such a strong person. There is no pain like the pain of your child being sick and you deal with it every hour of every day. I pray that Faith will get better and have that trip to the ocean. I can only imagine what you go through. Just know that we are here anytime you need to talk or vent or cry. We will continue to pray for Faith,Will and you daily. If there is ever anything I can do to help, please let me know!
    Love and Prayers,
    JJ

  11. Sheena

    DolphinTale is one of my favorite movies too, for the same reason. I was born with a disability, although not life threatening and Winter’s story gives me strength and hope. Faith seems to be an amazing little girl and I hope, like Winter, she becomes an inspiration to many people 🙂

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